One Bad Bug

Knock, Knock

2011-04-11T22:55:00.001-04:00

Jake: Knock Knock
Me: Who's there?
Jake: Me
Me: Me who?
Jake: Me POOPYHEAD!

Now, where did he learn that?

What Do People Do All Day?

2011-01-20T23:07:00.002-05:00

Jake's favorite book is What do People Do All Day by Richard Scarry. The book is a classic, but just in case you haven't read it, its a collection of little stories about daily life in Busytown. The book has stories like "The New Road", "A Trip to the Hospital" and Jake's personal favorite, "The train trip".

Jake stayed home from school yesterday (pink eye, again) and when I came home we played out our own version of what do people do all day.

"Jake, did you have a good day with Daddy!"
"Yeah, Mommy had to leave today"
"Do you know where mommy goes when she leaves everyday?"
"Ummmm to work".
"That's right! And do you know what I do at work?"
"Ummmm...
"I make books!"

Jake was very excited to hear this and gave me a huge grin. Later at dinner I wanted to see if he'd remember what I told him.

"Jake, what does mommy do all day?"
"Make books!"
"And what does Daddy do?"
"Fixes cars"

Now, I dunno about other kids, but Jake must feel pretty special knowing his parents work on two of his favorite things all day: books and cars! Can't get much cooler than that!

Conversations

2010-12-07T22:03:00.004-05:00

Last week:

Jake (as the furnace kicks on): That's the washing machine.
Mom and Dad: No, that's the heater.
Jake: No, that's the washing machine.
Mom and Dad: No, that's the heater.
Jake (matter-of-factly): That's the washing machine.
Mom and Dad: OK, it's the washing machine.

While making dinner:

Jake: That's salmon
Dad: No, that's tuna.
Jake: No, that's salmon.
Dad: Ok, Jake, it's salmon.

Jake: That's a lemon.
Dad: No, Jake, that's a lime.
Jake: No, that's a lemon.

At dinner:

Jake (as the furnace kicks on): That's the washing machine
Mom and Dad: No, that's the heater
Jake: No, it's the washing machine.
Mom and Dad: (sigh)

Putting My Money Where My Mouth Is

2010-01-01T23:53:00.002-05:00

Yesterday, I did something that I've never done before: I made year end donations to the hospitals that have played a role in Jake's care and to another organization which helps families travel to Boston for the fetal cardiac intervention. I don't have a lot to offer, in fact, money is tight with the holidays and property taxes due, but it just felt like the right thing to do.

The three hospitals I donated to have all played a role in saving Jake's life:

Boston Children's Hospital Advanced Fetal Care Center - designated for Fetal Cardiac Intervention Program

Morgan Stanley Children's Hospital of New York Pediatric Cardiology Program

Schneider's Children's Hospital Pediatric Cardiology Program

And the organization that helps families who find themselves in the situation we were in so many months ago:

The Ellianna Grace Foundation

New Years Resolution: To Update My Mommy Blog

2010-01-01T23:32:00.004-05:00

I failed miserably at mommy blogging in 2009. I tried, but time and energy were in short order for me these past several months. I don't see time getting anymore generous towards me, but hopefully the New Year will bring some new found energy and motivation. I could use a little of both, and not just for mommy blogging.

It's easy to get into ruts, and I've been in one for several months now. Going through something traumatic is tough enough, but picking up the pieces of your mind, body, soul and spirit, when you've passed that "if we can just make it through" part and life returns to normal has been tough. It's the everyday challenges that get to me, the effort it takes just to wake up and get out of the house each day.

I know I should be thankful for every moment, considering what we've been through, and believe me I am. I just wish someone told me how difficult everyday life would be once you've made it through hell, when things are good and you have to go back to normal.

So I've been depressed, unmotivated and zapped of energy. I'm working on it, though, and resolve to spend some time doing something I love: writing about my little bundle of joy. And hopefully that will help to get me out of this rut...

Dispatches from Boston

2009-11-09T23:41:00.006-05:00

We had our 1 year post surgery check up in Boston at the end of September. Jake's echos had stayed stable following his last Cath in February, and he has just been soaring at home, so we were expecting good news. Still, there's always that brief moment of panic I feel just before they tell us the results. If Jake's behavior is any clue to how's he doing, I should have known we have nothing to worry about.

It's always nice to see Dr. Tworetzky. He just has a way at putting us at ease. Jake certainly seems relaxed with him.

Dr. T. had two fellows with him who were interested in the fetal intervention and we got a pretty thorough update on it from his explanations to them. Jake was the 14th two ventricular birth in some 5 years of doing the FI. They now have 20 successes. I'd say they're getting better at doing it and that number of successes is due to increase steeply as they do more and more FIs.

Dr. T. illustrated some key things that they learned specifically from Jake's case, including that they need to give these baby's time for their heart function to improve. We were just about ready to have the Stage 1 Norwood surgery which would have joined Jake's ventricles, giving him the traditional HLHS anatomy. However, that plan was thwarted when he came down with Sepsis (a blood infection) in the ICU. We needed to wait until the infection ran it's course and the antibiotics did their work before he could have surgery. Fortunately, by the time that happened, his left ventricle was pumping enough blood to indicate that it might be ok without the HLHS surgery. However, we would be back for the EFE surgery (see early posts).

Hearing Dr. T. explain Jake's case to these traveling fellows drove home the point that this treatment is still so new, so cutting edge, that they don't even have enough experience or successes to predict outcomes. This is trailblazing medicine and we are on the front lines with them.

But I digress...

Jake went to sleep for his echo, thanks to the sedative, so that they could get the most accurate pictures of his heart possible.

Dr. Lock and Dr. Del Nido made brief cameos in passing. Sadly, both Linda Zaccinini and Donna Morash had the day off, and we did not have the pleasure of bumping into Dr. Marshall.

We stayed at the Yawkey House - which is kind of like a Ronald McDonald house for families. It was nicer than most bed and breakfasts we've stayed at. We were also fortunate to run into Mary Beth and Anne Louise Atherton, Jake's roommates in the step down unit from his first hospital stay.

All in all, it was a good trip. Jake's heart has stayed stable since his catheterization from February 09 and we will not need to return to Boston for another cath in 6 months. We are so relieved and as long as everything stays stable, we can count on being home for a nice long while.

Binky woes

2009-06-15T21:36:00.002-04:00

Right now: Jake crying inconsolably.
Reason: Removal of binky.

So we've decided once and for all to ban the binky. I know many may think that's a little harsh, that he's only 14 months and still needs it, and why don't we just relegate it to use only at bedtime. I agree one hundred percent. However, when both our pediatrician and cardiologist suggested that the binky may be related to a slight behavioral problem we have been experiencing, it was enough to convince us once and for all to ban the binky for good.

What behavioral issues could be caused by a binky? Try breath-holding spells. What is a a breath-holding spell? According to Wikipedia, breath holding spells are the occurrence of episodic apnea in children, possibly associated with loss of consciousness, and changes in postural tone that occur in 5% of the population. Basically, Jake wakes up in the middle of the night, sits up and begins to cry inconsolably, we rush in and pick him up, he cries so hard he can't catch his breath, he passes out, goes into a "seizure-posture", and looses consciousness for up to a minute. He's had about 15 of these such episodes since March. The episodes are terrifying and the hardest part is that they are benign. Despite that they have still resulted in me performing CPR, calling 911, and spending 3 days in the hospital.

When these episodes started to increase in frequency, our cardiologist became even more convinced that these were behavioral. She instructed us to put Jake back into his own room (we practically were sleeping in shifts with Jake in between us), and when he woke up crying, not to do anything. You mean like not even go into his room to make sure he's OK? I asked. Nothing.

It was incredibly difficult to stomach, but like clockwork, Jake woke up crying at 4am. Greg and I hovered outside his door, wringing our hands with concern and peaking through the open crack. Sure enough, when neither of came in to settle him, he lay back down and went to sleep. Amazing!

So problem solved, right? Wrong. It's incredibly hard not to run to your child when they are crying, regardless of the cause. So somewhere along the way, we started running back into his room to stick the binky in his mouth as soon as we heard a peep. It was a gradual progression but a few short weeks later he was back to his breath holding episodes again.

This time, our pediatrician concurred. Get rid of the binky. So here we are again, though this time we're sticking to our guns. So far, it kinda sucks, but as I finish typing I hear the cries softening and am hopeful that as I peak in, he will be sound asleep and stay that way until morning.

Jake and Binky: A History

Hey You With the Face

2009-06-09T22:31:00.006-04:00

My son has the uncanny ability to make the most ridiculous faces, and by ridiculous, I mean ridiculously cute.

Check it:

Poopy Face

Happy Face

Mischievous Face

Crazy Face

Sleepy Face

I can't believe I'm sitting Face

I'm in the tub and having fun Face

Whoa! Weee! Face

I blink for pictures Face

Please stop taking my picture Face

I'm the man Face

Nature Boy

2009-06-03T13:26:00.002-04:00

We've finally had a chance to spend some time outside these past few weeks. It seems like this year winter didn't go on forever as much as summer took so long to come. Some people might call that "spring", but it was far too dark and dismal for spring. Some might call it seasonal purgatory, or rather, San Francisco.

Luckily the rain has stayed away on the weekends and we're spending tons of time enjoying our new yard. Jake seems to enjoy it, as long as a blanket is underfoot. He's not quite sure what to do with this thing we call grass, besides rip it up and stick it in his mouth, but then he does that with everything. Here's some pictures from his first outing.

Would the real Jake Maxwell please stand up?

2009-05-25T21:14:00.002-04:00

Jake Maxwell Casden meets Jake Maxell Shufro.

Greg's brother's good friend Lee Shufro had a baby about a week or so before us. His name... Jake Maxwell. Fortunately, we didn't find this out until after Jake was born, not that we would change the name we had picked out for months. Jake got a chance to meet the other Jake Maxwell at his cousin Nicky's 3rd birthday party. I don't think either one was too phased by sharing a name.

Mother Nature got one sick sense of humor

2009-05-04T00:26:00.003-04:00

Nature has played yet another cruel joke on this family. As if it is not bad enough that the events of Jake's cardiac arrest are forever be etched into my mind to relive over and over again in my imagination, we will now have to suffer through a set of very similar events as a part of a benign condition Jake apparently has called "Breath Holding Spells."

We're in the hospital again, this time after Jake's fourth such spell in a three week time period. Jake had an echo on April 14th. The results were good, not normal, but still good, with no change from his last catheterization in February - overall, positive news. That night Jake awoke about an hour after we put him down crying. As I picked him up to comfort him, his crying became more intense. After a particularly hard sob, Jake could not get his breath back, and proceeded to hold his breath of close to 20 seconds. After he finally took that breath he went stiff, the color drained from his face, his eyes were open but rolled back. He was out for close to a minute.Then, just as quickly he snapped out of it with a couple more cries and went back to acting completely normal.

We placed him on the pulse/ox immediately and his vitals were normal. His coloring came back immediately, and he sucked down 5 ounces of milk like nobody's business. It was as if that event never happened, which is why the cardiology fellow on call wasn't too concerned when I called him to tell him what happened.

Fast-forward a couple days to Friday Night: We have a repeat of the exact same sequence of events as I describe above, right down to the timing - about an hour after we put him down. Only this time when I get to him he looks like he's having a seizure. His back is arched, eyes rolled back, hands and arms twisted up by his head and feet curled in. Then he slumps into unconsciousness again. We were terrified and called 911. By the time the ambulance arrived Jake was back to acting totally normal. We decided to take him in anyways so here we are - all of Jake's vitals are normal and he's no worse for the wear. It's hard to say the same for his parents, however. Quite frankly, I just don't know how much more we can take.

The making of a tear

2009-04-22T22:14:00.004-04:00

I've got wings, but I can't fly...

2009-04-19T22:24:00.002-04:00

I'm talking about Jake's hair. I always knew I'd have a little rugrat running around rocking some badass hair.

"I Love Presents!"

2009-04-19T12:24:00.002-04:00

If I ever get around to updating the blog to recap our Christmas, you'll see the adorable onesie I got Jake that has a mischievous looking Christmas Tree on it with the voice bubble saying, "I Love Presents".

Jake was flush with presents for his birthday, too. Check him out on his new ride-on toys:

A new hot-rod from mom and dad.

And a "Race Day" ride-on from Cousin Nicky and his parents

Jake loves to ride around on both of them!

Psycho-Mommy Photo Shoot

2009-04-19T12:12:00.002-04:00

An overzealous photo shoot the morning of Jake's birthday produced 80+ images. Here are some of the best ones:

One Bad Bug is One Year Old

2009-04-19T11:48:00.002-04:00

Jake is one! He turned one four weeks ago. Make no mistake, I now suck at blogging. But rather than explain, I'm just going to share. Below is a letter that I've written to all of his doctors, and to anyone who has involved in his care over the past year. It sums up the emotion this occasion brings up for us.

March 26, 2009

Today is our son Jake Maxwell Casden’s first birthday and it's been an unbelievable first year. He's had more harrowing experiences than most people ever go through in a lifetime and has made it to this huge milestone no worse for the wear.

Jake was diagnosed with aortic stenosis evolving into Hypoplastic Left Heart Syndrome at 22 weeks gestation. We underwent a fetal cardiac intervention at Boston Children’s Hospital. Jake was born in Boston on March 26th and had a catheterization at six hours old to dilate is aortic valve and create an ASD. Jake had a rough start but with time and medical management, he was able to leave the hospital without needing surgery.

We eased into life at home with the knowledge that at some point surgery to repair or replace his valves and to remove scar tissue from his ventricle was probable. Eating, reflux, and weight gain presented problems, but overall, life was grand. We were so happy to finally have our little boy home.

On the evening of August 3rd, Jake awoke from a nap with an intense cry. When he settled, he just didn’t look right to us so we brought him to the emergency room at Columbia/Presbyterian. An echo showed he was in heart failure. The next day, while awaiting transport to Boston, Jake went into full cardiac arrest. It took thirty minutes of CPR and several defibrillator shocks to get his heart rhythm back to normal. Fortunately no neurological, tissue or organ damage was sustained and we set about on the road to recovery. Another month in the hospital and Jake was able to make the trip to Boston.

On September 9th, coincidentally our wedding anniversary, Jake underwent open-heart surgery at Boston Children’s Hospital for EFE resectioning, aortic and mitral valve repair and an ASD fenestration. There’s been no looking back since!

Today, Jake is absolutely thriving. In January, he turned a corner. At that time, he was barely able to sit supported. Now, just three months later, he’s cruising and climbing! His reflux issues have also subsided and mealtimes have become much less stressful and he is finally starting to gain a little weight. At just about 17 lbs, he is small but mighty and we find it difficult to keep up with his unrelenting energy. He's commando crawling, getting his teeth, babbling, pulling up to standing, cruising and learning more and more each day. He loves his books and toys and can entertain himself for what seems like hours without fussing. All in all, we’d say Jake has quite a normal, not to mention wonderful, life.

As for his parents, well, we’ve learned a lot about who we are and what we’re capable over the past year. Strength and love go a long way but you have to arm yourself with knowledge, too. We’ve learned to believe in the power of science and medicine and to trust doctors who do not always have the answers. And we’ve been inspired to be better people by the remarkable example shown to us by our little fighter.

As we reflect upon the events of the past year, we find it hard to find the words to thank you for the role you’ve played in helping Jake reach this milestone. Sometimes words are not enough; therefore, we have made a donation to the pediatric cardiology programs at both Boston Children’s Hospital and Morgan Stanley Children’s Hospital of New York. Please know that you have played a very important role in this family’s happiness and our gratitude to all involved is unending.

Sincerely,

Amy, Greg, and Jake Casden

We had an awesome party to celebrate with at least fifty people at our new house. It was the first time many of our friends had seen Jake since before his arrest last summer. I was so busy entertaining and showing Jake and the house off that I didn't get too many pictures. Here's a few...

Bad Bug cupcakes decorated by the lovely Laurie Rudnick

Make a wish!

Jake's first taste of sugar!

Cheers!

Present and Future Posts on the Past

2009-04-06T21:42:00.007-04:00

I'm sorry I haven't updated in so long... (see previous post!)

It's true, I've lost momentum. Blame it on being overworked and overtired. Blame it on stress. Blame it on moving and unpacking, and getting my house in order (oh, yeah, we moved to the burbs and bought a house - details to come in a future post, or not). Blame it on wanting to spend my idle time spending time with Jake. Blame it on spending my idle time watching American Idol. Blame it on Facebook. Blame it on the rain that was slowly falling. Whatever the reason, it would seem that my daily schedule and motivation are not aligning to send me to the computer to update this here blog. Do I feel guilty? Hell yeah I do.

For now, I'm going to work on backtracking a bit to cover all the milestones and pitfalls we've had over the past few months. There's been a-plenty of both.

Merry Christmas

Christmas is my favorite holiday. At one time I tried to make myself sound cooler by falsely claiming New Years was my celebration of choice. Afterall, that fit in better with my party-girl image. But who was I kidding. How can you compare blowing a few horns and maybe kissing someone at midnight with presents? C'mon, presents! There's not much competition, is there.

In keeping true to my well intentioned philosophy of indoctrinating my beliefs upon my child, I went out and purchased this lovely onesie for his Christmas photos:

By the way, did I mention that Jake is half Jewish? Regardless, Christmas calls for celebration. Decorating, presents, food, and more food. And then, more food. My Aunt Jo makes three dinners for Christmas - Egg drop soup, followed by ravioli, meatballs and sausage, followed by smoked ham and turkey - a sort of deconstructed Turduckin, but better . But before we even get to that three dinners for one, there's Christmas Eve and The Feast of the Seven Fishes - not one, not two.... but SEVEN different seafood dishes. And then there's the appetizers and desserts and cookies and cookies and desserts... It's insane. The first time Greg came home with me he went and laid down on the couch away from everyone. When I went in to check on him he said he just couldn't be around food anymore.

However, this year we're staying home. It's just too early to travel with Jake. It's too close to his surgery and there's just too much at risk. While I'm sad and will miss my family, I must admit that there is something special about spending tour first holiday with just the three of us.

I'm looking forward to presents and to giving Jake lots and lots of presents for many years to come.

Excuses, excuses

2009-02-26T21:15:00.004-05:00

I'm not even going to start this post with "I'm sorry I haven't updated in so long...". So I haven't updated. I've been a little busy. We've moved. My living room is still stacked with boxes. The house is halfway painted and we have an entire room without furniture. Then there's the regular household chores like scrubbing toilets and doing dishes and doing laundry (although those last two are a helluva lot easier with a sweet dishwasher and washer and dryer). Then there's work. My company laid off around 100 people. I'm pretty happy to have my job - let alone a job I love - but it's been stressful. Oh, and did I mention I now spend 3 hours a day commuting.

But enough of the excuses.

I feel guilty as all hell for not sharing Jake's stories for so long. I have a backlog of posts swimming around in my head but I have to move on with the current tales. Maybe I'll get around to getting caught up someday, but with an 11th month old, a new house, and a stressful job, maybe I won't.

Home Sweet Home

2008-12-22T22:41:00.002-05:00

I have never appreciated the true sentiment of "home sweet home" more then returning home after spending weeks and sometimes months in the hospital with Jake. We have been through so much with him and to return home, physically and mentally exhausted, gave deeper meaning to the phrase.

Now, "home sweet home" has taken on yet another new profound meaning because we have just closed on our first house today! We bought a modest yet cute 1940 ranch home in the 'burbs. It's in a quiet neighborhood, has a good yard, a garage for Greg to work on our cars in, a washer and dryer (no more laundromat!) and Jake will have his very own room! It's structurally sound but needs some updating, and we intend to return it to it's mid-century modern splendor with some hard work and time. You can read all about our retro renovation at 31 Sherman.

We want to give Jake the world, and though a house is not the world, it's definitely an upgrade from the one bedroom apartment we all share now. I can't wait to paint and decorate his room, to see him run around the yard, for family holidays together in our home and for all of the memories we'll make there together.

Home, sweet home, indeed.

The Many Moods of Jake Maxwell Casden Part 3

2008-12-20T22:38:00.004-05:00

One photo shoot. Many moods...

Peek-A-Boo

2008-12-15T21:49:00.002-05:00

Jake plays peek-a-boo! We've played peek-a-boo for months, and Jake loves it, but this was the first time Jake decided to play along. I think he might just be the sweetest thing in the whole world.

Jake Casden is a Wild Man!

2008-12-07T21:30:00.003-05:00

Jake is a wild man! He has more energy than any baby I've ever seen. He's so energetic that he actually broke his bouncy seat. Greg had to rig it up so we could still use it. Sometimes I think he may bounce right out.

Check it out.

Plush Guts and Microbes

2008-12-07T21:13:00.004-05:00

I found an awesome gift for Jake from I Heart Guts. They have great stuff including spleens, kidneys, the digestive system and even a plush uterus!

Jake loves his heart and the aorta makes for a great teething toy.

This reminded me of Giant Microbes, plush little cuties of all your favoriate ailments, including bed bugs, e coli, herpes and the common cold.

I think both I Heart Guts and Giant Microbes offer excellent stocking stuffers. Get 'em now for the holidays!

I Suck My Thumb, and My Fingers and Toes!

2008-12-03T22:39:00.002-05:00

Exhibit A

Exhibit B

Exhibit C

Pick of the Litter

2008-12-01T22:35:00.007-05:00

Jake has discovered the cats. He reaches and grabs for them whenever they are near.

I think its fair to say they've gotten pretty used to each other, and rather comfortable together. Wouldn't you agree?

Get Caught Reading

2008-11-29T09:10:00.005-05:00

Jake loves books. Reading is a great way to calm him down. If he's wound up and bouncing all around, we can just open a book and he'll be immediately calm and captivated.

Some of his favorite books are Brown Bear, Polar Bear, and Panda Bear; My Truck is Stuck; The Byron Barton books: Planes, Boats, Trains, Trucks and Machines at Work; My First Book of Sushi; I Stink; Little Puppy and Little Bee puppet books... The list goes on and on.

Peek-A-Poo?

2008-11-27T23:38:00.004-05:00

Jake got rather excited during this game of Peek-A-Boo with Dad. Turn your volume up and stay tuned at the end for a special treat.

This is what I'm thankful for...

2008-11-27T22:58:00.012-05:00

Jake.

He's home, he's happy, and despite his heart issues, healthy.

'Nuff said.

Clap Your Hands (and Say Yeah!)

2008-11-22T19:14:00.007-05:00

Jake has always loved when I sing "If You're Happy and You Know It" to him. He smiles and laughs when I sing it. Lately, I've been clapping his hands together while singing. Today, I was repeating "clap your hands" over and over again while clapping his hands for him. Twenty minutes later, he's hanging out in his bouncy seat and I walk by and see him trying to clap his hands. He's been doing it all night, including when we sing "clap your hands".

We've just finished our evaluations for Early Intervention to help Jake get past some of his developmental delays. Jake is about 3 months behind on his gross motor skills, a natural effect of spending 3 months in the hospital. Even still, it's difficult to be told your 7 month old is physically at a 3 or 4 month level. So this is a major milestone - mimicking an action and following a command! I feel like there is a whole new meaning to the phrase "swell with pride" because I can feel it radiating from me. Go Jake, go.

Tomahawk Chop!

2008-11-08T08:53:00.004-05:00

Jake has a brand new habit. I like to call it the "Tomahawk Chop".

Whenever Jake is just hanging out in his bouncy seat, the right leg is chopin', chopin', chopin' away. It makes his bouncy seat rock back and forth, so much so that it broke!

I caught his new trick on film recently. Unfortunately, I had the camera the wrong way so you gotta tilt your head to watch it. Enjoy.

Happy Halloween!

2008-11-01T08:05:00.005-04:00

Best Dressed

2008-10-25T21:28:00.015-04:00

Jake is one sharp dresser. Black is his color. In the hospital I tried dressing him in a yellow and green striped number with little frogs and fish on it - genuine baby stuff. He just didn't look right. Jake is definitely my little man in black.
This binkie and cross-bones shirt is quite possibly the coolest baby shirt ever. It's my favorite piece in Jake's wardrobe. This shirt is a real crowd pleaser too. I always get compliments on it.

iPood. Now that's clever - hispter, but clever.

Camo might just be my favorite color. This blanket reminds us to bring the cool to our accessories as well as our clothing.

Rocking the fauxhawk in a hand-me-down Stones onesie. Old school cool.

Who said sleeping gowns are only for old men? A sleeping gown in fancy camo is at the height of baby hipsterdom.

Minding the accessories once again, Jake sleeps on an old-time sailor tattoo patterned bed sheet. It doesn't get much hipper than that. Well, maybe if you throw in one of those trendy Ugly Dolls it does.
Jake sports a CBGBs onesie to show that he's the child of a punk rocker.
Skulls are a recurrent theme in Jake's clothing. This ensemble comes to us from (gasp) Baby Gap. Who knew?
Jake is mommy's little badass in this black skull hoodie. Badass!

Here's Jake in a pair of designer blue jeans from the Dutch label Imps and Elfs. Imps and Elfs specializes in urban-contemporary baby clothes putting a special focus on the baby's body shape, for a very comfortable fit (that's actually what it says on their website). Also on their website: A boy playing "Sweet Child O' Mine" on what appears to be a wooden parsnip. No kidding.
I love Jake so much it breaks my heart. "Mom's Ruin indeed!"

Chicks Dig Scars

2008-10-25T15:24:00.002-04:00

Chicks dig scars
and boys who play guitars.
We hang out at bars.
We're gonna go real far.

I sing the chick's dig scars song to Jake every time I change his clothes, give him a bath, every time I see his scar. It's true, chicks do dig scars. I'm a chick and I love scars. I hope someday Jake meets a chick who loves not only his scar, but everything else about him. That will be one cool chick for one bad bug.

While I often make light of Jake's scar, at times it pains me to look at it. It's crazy to think that doctors cut my son open and operated on his heart. But the truth is, this surgery has helped him beyond what we had imagined. We have never seen him breath as comfortably as he is now. He used to breath around 70-80 breaths per minute. Now he's down to the 40s. And no more retracting or flaring like we used to see. It's really quite amazing.

Someone we know told us that our surgeon, Dr. Del Nido, has been said to have the hands of god. Now, I'm more a believer in science than one supreme being creating man but I have to agree that Dr. Del Nido did a bang up job on Jake. I think Jake agrees too from this picture.

The Space Time Continuum

2008-10-24T20:09:00.002-04:00

The amount of TIME I spend adjusting the SPACES between paragraphs on blogspot is maddening!!!

Photo Blog

2008-10-23T22:26:00.004-04:00

I posted a new photo blog of Jake's last hospital stay and open heart surgery on Flickr. You can check it out here.

I know some people question why I take and share these pictures. Sometimes I question if I should do so myself. I've heard a few people say they can't stand to look at them. The thing is, when I look at them, I don't see an awful picture of a baby recovering from heart surgery. I see my son. If we were at home without these health problems we'd be taking pictures of our pride and joy everyday. These are our baby pictures. These are our everyday pictures.

Look at how proud Greg and I are in the picture below.

This was taken when Jake was two days old, after his first catheterization (not counting the one he had while still a fetus). We don't see the wires, the tubes, or how puffy Jake looks. We don't see the high-tech equipment supporting him. We see our son and think he's beautiful. This is why I take pictures of Jake in the hospital.

Hiatus

2008-10-12T15:09:00.001-04:00

One Bad Bug has been on hiatus. This was partially self-imposed and partially because Children's Hospital blocks any site considered a "social networking site". You don't want those teens keeping in touch with their friends on MySpace or Facebook while they are in the hospital now, do ya? Consequently, the two sites I most often use , blogspot and flckr were completely unavailable to me. Can't very well update the blog without access to those sites. The Internet was often broken as well. It was a crap shoot whether or not the WiFi would work in the ICU and there was so much to do in Step-Down that my computer and TV time both suffered.

I've also needed a break, not from the blog exactly, but from thinking, from remembering, from everything. The events of the last couple months have left me exhausted. Experiencing you child have a sudden cardiac arrest and open heart surgery are no small shakes. I sometimes wonder if I'll ever be able to relax again. When I get home at night I can barely muster up the energy to turn on the computer let alone tap those creative juices for some clever and witty blogging. I guess I shouldn't try so hard. I should remember this blog is for me and for Jake and someday we'll be able to read it and remember the hard times and think, "I can't believe we went through that." Then I can show Jake his pictures and tell him stories of what a strong, brave boy he was and how much happiness and joy his life has brought us. And that is what inspires me to get back on the blogging horse and tell the tales of the past months, both good and bad, and to look forward to recording Jake's many adventures that are yet to come.

Shark Attack!

2008-09-28T22:33:00.002-04:00

We were really bummed to discover that we left Rat Fink at home. Rat Fink kept Jake company throughout his two previous hospital stays. Aside from being born in the year of the rat, we thought Rat Fink would serve as a reminder of his Brooklyn roots. Rat Fink was quite the talk of the nurses when Jake was in the ICU last time.

Jake has a new friend. Meet Sharky. Not only does Jake love Sharky, he also provides his parents with hours of entertainment.

Happy Half-Birthday

2008-09-26T22:36:00.005-04:00

Jake turned is six months old today.

Month one was terrifying. We had no idea what would happen with Jake when he was born and spent most of his first month wondering if he would need surgery. Month two was great. We brought our little boy home and jumped right into family life. Month 3 was a lot of fun. We were really starting to know our son and were watching him learn new things everyday. Month 4 started good enough but ended horribly with Jake in the hospital having suffered a full cardiac arrest. Month 5 was trying. We came to Boston for Jake's open heart surgery. I have the feeling Month 6 will be good because Jake's heart is improved and we should be taking him home soon.

The laughter, happiness and joy we've experience in these past six months far outweigh the tears, sadness and anger. We would do it all over again because now we have the most beautiful, strong and resilient little boy and we couldn't imagine life without him.

Happy half-birthday Jake. We love you and are so proud of how far you've come.

Tales from Toyland - Taggy the Tag-O-Saurus

2008-09-16T22:22:00.003-04:00

Jake has a new favorite toy - Tag-O-Saurus! It's soft and silky on top with a rougher fabric on the bottom. It's educational and sensory and stimulates grabbing with 8 different tags running down it's back. Jake just loves it.

We give it to him while he's laying on his back and he kicks his feet up and then roll over and hugs it.

When plays with it in his bouncy seat he usually ends up kicking or throwing it to the floor. Then we give it back to him, only to pick it back up for him again. If I didn't know better I'd think it was becomming a sort of game for him.

Throw your legs in the air!

2008-09-16T21:41:00.004-04:00

Jake has always moved his legs like crazy (see "March to the Barch" post). Just recently he's started throwing them in the air. He likes to just hang out with his legs up. We caught him in the act the night before his surgery.

It was nice to see him so happy and active that night since we knew it would be awhile before he'd be able to do this again. He's starting to move his legs again now, mainly kicking them in agitation and protest. But here and there he's doing Jakey things, like kicking his leg up for no apparant reason. We know its just a matter of time before he's back at it full force.

Weird Boston

2008-09-16T21:34:00.002-04:00

Some insights, annoyances, and observations on Boston:

You don’t go to a deli and order a sandwich on a roll, you order it on a bulkie roll. The other day I ordered tuna salad on a roll with lettuce and the deli clerk literally had no idea what kind of bread I wanted.

All young nurses have giant rock engagement rings. All old nurses have four or more kids, usually boys. I wonder if the giant rock is the consolation prize for having to pop out kids in rapid succession.

Just because Massachusetts state law require vehicles to yield for pedestrians in crosswalks does not mean you can just step out in front of a moving car and expect it to stop. Furthermore, if you are at a 4-way intersection and the light says don’t walk, it is ok to walk if no cars are coming.

The Trader Joes has its own dedicated traffic cop. Now, this is just not some employee with a day-glow orange vest on. This is an actual law enforcement officer. I wonder if they fight over who gets Trader Joe’s duty and who has to patrol Roxbury.

Red Sox fans are ridiculously fanatical. They will beat you silly if you wear a Yankees hat. If a Yankees fan is a barking dog, a Red Sox fan is a rabid barking dog.

There are more Croc wearers per capita than anywhere else in the world, even Boulder, Colorado where those god-awful shoes originated.

All bars are decorated in kelly green, wood paneling and brass.

My Little Boy

2008-09-13T23:14:00.004-04:00

There's just something about this picture that I love, and I think I've just figured out what it is. Jake looks like such a little boy here, no longer my little baby, my little boy!

I always look at Jake and say, "you'll never be this small again". And yes, just like every normal parent, that makes me a little sad.

I read a comment on another "heart mom" blog recently that said the time other people spend lamenting the fact that their babies are growing up they have spent hoping their baby would get to grow up. I understand this, but honestly, I have never ever felt this. I've never had any doubt that Jake would get to grow up - to have his first day of school, learn to ride a bike, skin his knees, shed some tears, make friends, get in fights, fall in love, have his heart broken, talk back to us.... I can imagine Jake's future with us, and to me, it looks very bright.

I look at my little boy now and think about how grown up he already is, how much he's already had to endure in his short life, and how much he's already taught us. I look at him in awe and I just know my little boy will go on to do more great and wonderful things. He is truly our hero.

Annual Casden Day

2008-09-13T09:51:00.005-04:00

September 9th from here on out is Annual Casden Day!

September 9th, 2006 is the day Greg and I were married. September 9th, 2008 is the day Jake had open heart surgery to fix up his ticker. This will forever be a day for us to celebrate together as a family.

Jake was essentially in heart failure. When we were at Columbia/Presbyterian, they treated the symptom of the problem. We came to Boston to fix the problem.

It's too early to tell if the surgery worked, but our little guy is hanging in there. In the words of our surgeon, Dr. Del Nido, Jake is a champ! Jake's surgery is detailed on his Care Page so I'll spare the details here. So far Jake's echo shows definite improvement and we feel optimistic. We're in the difficult balancing phase of Jake's recovery. He needs his sedation to keep his pressures down but he needs it lifted to get off the ventilator. We've had a couple set backs after two good post-op days. Everyone feels Jake just needs more time to recover. The hardest part is not seeing him smile and play, or be able to touch and hold him. It's a frustrating and worrisome time but I'm confident we'll have our bug back soon.

Here he is recovering the day after his surgery.

Doped up!

2008-09-12T10:26:00.002-04:00

Jake is doped up! He's on a continuous morphine drip with hourly boulous doses of methadone and ativan and versed. He's built up quite a tolorance to narcotics over his past two hospital stays. The nurse assures me that this will in no way make him suceptable to addiction later in life. After going through what we've been through already, I'm inclined to think the teenage drug expirementation years will be a breeze.

This is Jake jacked up on methadone the day before we went home from Columbia Presbyterian. The CBGBs onesie makes this picture that much more hilarious. I myself have ended up wasted and cross-eyed more than once after a long night at CBs.

Parlor Tricks

2008-09-10T21:19:00.003-04:00

Jake has a new trick. He can hold his bottle on his own!

Yeah, I know you're not supposed to let your 5 month old hold their own bottle. There's the risk of choking and then tooth decay (if he had teeth). But this was just so cute not to snap a quick picture before holding the bottle for him.

Jake's other new trick is taking his binky out and putting it back in. I have yet to get this feat on film. Jake grabs his binky, takes it out of his mouth and then tries, usually in vein, to put it back in. Every once in awhile he hits his target. The rest of the times he puts it in backwards, throws or drops it, or aims for his eye. It's hilarious to watch.

It's so much fun to watch him grow and learn. Just the other day he rolled over from his back to his stomach. He's discovered his legs and feet the other day. He kicks them like crazy now and grabs them when he's playing. When he's on his back they are straight up in the air. when he's sitting, they're going nonstop. He lifts his entire butt and back up off the crib and "scooches" all over the place. He amazes us everyday.

Jake had open heart surgery yesterday. It's hard to see him all doped up on pain meds and paralytics. They'll slowly start to wake him up, but it will be quite awhile until he's totally active again. I can't wait to see those tiny legs going again soon. Hopefully it won't take him too long to pick up right where he left off.

About Me

2008-08-29T22:48:00.008-04:00

I'm loud, rude, crude and obnoxious. I like to swill cheap beer outta cans and piss outside. I drink like a fish and have a mouth like a sailor. I've been told I'm a little rough around the edges... as if that's a bad thing.

That's the current "About Me" on my MySpace profile. Of course, it was written years ago, when I was a ruthless wild child. That was long before the responsible parent that I am today showed her face. Its funny how quickly life changes. What once was so important hardly matters at all now.

If I were to rewrite that "About Me" today, it might read something like this:

My family means the world to me. My son is my hero and the strongest person I know. I'm lucky enough to be married to a kind and brilliant man who loves old cars. I enjoy all sports, both playing and watching, but now I only have time for the watching. I know more about congenital heart defects than most medical professionals and have spent a lot of time in hospitals lately. My interests include updating my "mommy blog" and taking pictures of my family. In the near future I hope to buy a house with a yard and garage in the suburbs and spend as much time with my family as possible.

I never thought in a million years a paragraph like this would describe me, but now that it does, I can't imagine it not. Life before my family was a blast, but life with them is more rewarding than I could have ever imagined.

Tales from Toyland: Texture Bear

2008-08-29T22:00:00.007-04:00

Toys today are so educational. They squeak, crinkle and honk. They have multiple fabrics and colors. They're soft but hard in some places, smooth and silky and squishy or rough in others. They have teething rings, mirrors, ribbons and bells attached. I mean seriously, it's stimuli up the wazoo! We didn't have toys like this when I was young. I had the Fisher Price Happy Apple and loved it.

Happy Apple = Happy Baby

This is Texture Bear.

Texture Bear offers tactile, auditory, and oral stimulation.

Texture Bear and Jake are friends.

Texture Bear plays Peek-A-Boo with Jake

He's quick to lend a helping hand...
Or an ear to listen.

Texture Bear makes Jake happy...

Really, REALLY happy.

At the end of the day, it's Texture Bear and Jake all the way.

Baby Book Guilt

2008-08-26T23:03:00.009-04:00

When I was little I used to love to pull my baby book off of the shelf and ask my mom to read it to me. There were a few entries in it and a lot of blank pages. My older sister's baby book was filled to the brim with first smiles, laughs, teeth, birthday parites and more. I guess that's the curse of the second child. The novelty just wears off.

I bought the most precious baby book for Jake and swore I would write in it everyday.
I'd record every first - sneeze, yawn, cry, smile, laugh, and more. I would diligently detail all of our hopes and dreams and fears for him.
Well, that didn't happen!

The first month I scribbled furiously. Every cough, sneeze, yawn and more were noted and dated. Quantity was emphasized over quality. I aimed to fill every white space with tiny inked print. The second month there are a few entries. I managed to stay pretty on top of things. The third month has jsut two entries, scribbled from memory a couple of days or weeks after the fact. The fourth month there is nothing.

But who needs a baby book when you have a "Mommy Blog"?!

This blog has been an awesome way for me to record Jake's milestones, write my thoughts, and document it all with photos and videos - all with the power of editing! No baby book can do that. So I'm hanging up my baby book guilt and moving ahead with the times. From here on out, it's all about the blog.

Hair Loss

2008-08-26T16:33:00.003-04:00

I'm loosing my hair. It's coming out in handfuls. Fortunately, I have enough hair to fill any spandex metal band from the 80s with envy so I'm not worried about going bald. Still I'm a little concerned. They say this happens after pregnancy, but I can pin it almost to the day I decided to dye my hair black with copper streaks. I was trying to look more rock-n-roll and less 35 year old mom and now i'm paying with hairloss!

Jake is also loosing his hair. Three weeks of laying on his back in the hospital have worn him a bald spot to rival an old man's. It will grow back as soon as he starts sitting up.

Jake had so much hair when he was born. It stuck straight up.

I used to like to slick it up into a fauxhawk. I would tell everyone, "oh it just does that on its own.", but truthfully, I would make it stick up on purpose.

Sometimes it looked like he was showing early signs of male pattern baldness.

But soon enough he started growing in new permanant hair.

Soon it became too long to wear in a fauxhawk... Or the devil lock.

Most of his newborn hair has been replaced by his new permanant hair It's not as wild as it was but it's still adorable. He can't always be the hipster baby with a fauxhawk in a black onesie. Sometimes it's nice to brush his hair and have him look like a normal little boy.

Looking for Laughs

2008-08-25T21:44:00.012-04:00

Jake has started laughing! It's a quiet giggle for now, but it's there. Boy, I can't wait for the belly laughs and squeals that are just around the corner. Whenever we hear his giggle, we go out of our way to get more chuckles out of him. We usually end up acting like two deranged idiots, laughing at top volume in his face and tickling him. Sometimes we go too far as evidenced in the video below.

So far the things that make Jake giggle:
-Nuzzling his cheeks and neck
-Playing Super Jake and Lone Ranger (see "The Games We Play" post)
-Cooing at him
-Giving him Eskimo kisses

He even thinks Mommy's singing is quite funny.

I hope he has a life filled with laughter. He's certainly on the right track, waking up each day with a smile. I can't wait to find out what else makes him laugh.

Photo Blog

2008-08-25T21:31:00.002-04:00

I created a photo blog of Jake's hospital stay on flickr. It helped me to see his improvement with each day and to write about what was happening.

Check it out here.

Multiple Choice

2008-08-25T20:08:00.003-04:00

What is Jake doing in the videos below?

a. Busting out the latest hip hop dance moves
b. Baby yoga
c. Trying to poop
d. Trying to roll over

Kicked in the Gut

2008-08-24T21:59:00.005-04:00

After 20 days in the hospital, we are finally home. We weren't supposed to be out of there until Monday. The only reason they were keeping us was because it was the weekend and it seems hard to get anything done in a hospital on a weekend. So a few of the residents kicked it into gear, got us our prescriptions and discharge instructions and sent us on our way.

I'm happy to be home, but it's hard to bury that "kicked in the gut" feeling. When we left Boston, I was terrified. Eventually we were able to relax and were feeling very comfortable in our lives as a family and in Jake's health.

Did we relax too much? Jake didn't seem to show any signs that he wasn't doing well. But now that I think about it, did he? Did our want and need for him to be OK overshadow the warning signs? "That's just the way he breathes sometimes," we told ourselves and anyone who asked whenever he breathed rapidly. And we were lucky if we could get him to take more than 15 ounces of milk a day for the past several weeks. He awoken with that cry/scream a couple of different nights before the arrest. Was that a sign we shouldn't have ignored?

It's hard not to question yourself, your instincts, and your gut. What if we had made another excuse after his episode at home that Sunday. It's painful to think about the "what ifs". But, in the back of mind is the big "what if". What if this happens again while we're home. Sometimes it's just too much to take, which is why we slip into denial. I have security in the fact that Jake is very different from when he went into the hospital. He now has an ASD and is on a completely different set of medications. And, he's been doing great. But I don't know if that fear will ever go away.

I study him constantly now, and will not hesitate to act at the smallest notion that something is not right. Hopefully that kicked in the gut feeling will slowly subside, and hopefully I'll be able to relax again soon. And even when this is all behind us and we do not need to constantly worry about Jake's health, I will never ever forget how close we came to losing him.

Another Gorgeous Sunset

2008-08-21T12:33:00.004-04:00

Another night in the ICU, another gorgeous sunset . These pictures were taking on day 13 of our hospital stay. Having a view like this certainly helps with the incredible stress we're going through. Whoever designed these ICU rooms really must have given consideration to the parents' peace of mind.

We moved out of the ICU to "the floor" two days after this gorgeous sunset. The view wasn't nearly as good. In fact, we didn't even have a window! We were in a shared room on the door side. Our roommates have moved on and we've finally moved over to the window, which helps. But when it comes down to it, it really doesn't matter what the view is down here because we're that much closer to going home.

When Heathens Pray

2008-08-21T12:17:00.005-04:00

If it's one thing Greg and I are not it is religious. However, in desperate times you do desperate things. We don't believe in god but if there is a greater power that controls the universe out there, we have this plea:

Please help our son, Jake Maxwell Casden, make a quick and full recovery so that he can lead a long and prosperous life filled with love, joy, and happiness.

He has suffered through more pain in 4 months than many people endure over their entire lives. He is the strongest person we know and deserves to lead the fullest life he can from this day on. We hope he lives well on into the next century.

We cherish every waking moment with him and will continue to do so for as long as we are here on earth. We promise to never take him for granted and love him unconditionally, forever.

He is the most beautiful boy imaginable. Our love for him knows no boundries. His sweet disposition makes the world a better place and will continue to do so over the course of his hopefully long life.

PLEASE HELP JAKE RECOVER AND LEAD A LONG, FULL LIFE FILLED WITH LOVE, JOY, AND HAPPINESS.

Helpless and Hopeful

2008-08-20T23:28:00.004-04:00

A couple of days ago, I held Jake's hands and rubbed his head while someone from IV tried and failed three times to place a peripheral IV line. This isn't a quick poke or pinch from a needle. They tie off each limb with a rubber band looking for their best vein, find a promising one, then poke, move the needle around, poke some more until they either get it or need to try again. All the while, Jake screams, cries, and writhes in pain and I am helpless to do anything for him.

I've been feeling helpless a lot lately. This morning, Jake went for another catheterization. There's nothing to describe the feeling of turning your child over to doctors and saying, "Please take care of him." You watch him go through those doors and your heart screams, "PLEASE, PLEASE, PLEASE BE OK." Then you wait, and wait, and wait for what seems like forever just to hear he made it through and he's doing well.

There is nothing that will be harder than this.

This morning Greg came into the room and woke Jake up. Jake opened his eyes and smiled wide at him as if to say, "Don't worry, I'm going to be just fine." So with helplessness comes hopefullness and optimism. Our boy is the strongest person we know. He's a fighter and our hero and we love him more than anything. The wait is excruciating but we know he'll be back, and will open his eyes and give us that gorgeous grin again soon.

Be strong bug. Mommy and Daddy love you.

Holla!

2008-08-17T23:51:00.003-04:00

There's just something about these pictures that makes me think if there were a speech bubble attached it would say, "Holla!"

Smile!

2008-08-16T12:04:00.003-04:00

When Jake first started to smile, we exhausted ourselves trying to catch one on camera. We'd sit there for extended periods of time tickling and rubbing his belly, talking in that sing-song parent voice trying to get him to smile. We were so excited when we finally caught him in the act!

Jake smiled consiously this morning for the first time since his arrest! I have been trying to get him to smile for days, nuzzling his cheeks and singing my "Mommy loves Jake" song to him. Leave it to the doctor shining a flashlight in his eyes to do the trick! I walked away from his bedside for one moment, just as he cracked a smile. He gave me a smile the morning after his arrest, while he was still totally out of it. It was as if to say, "Don't worry mommy, I'm going to be ok." When he did that and opened his eyes, I knew he was in there and that he would be smiling again very soon.

Sleepyhead

2008-08-15T21:47:00.006-04:00

Jake slept all day today. It may have been due to medications, or perhaps to sheer exhaustion. After all, he has gone through quite a lot in the last week and a half.

There's such an innocence about him when he's sleeping. I wish I could gather him up and put him inside of me and protect him from this cruel world. He's known more pain in his short four months than most will experience in a lifetime. But when he's sleeping, its as if he doesn't have a care in the world. I could watch him sleep forever, but then I'd miss his smile, his bright eyes, and how happy and full of life he truly is.

Sweet dreams, my little bug. Mommy loves you.

The View from the ICU

2008-08-15T13:38:00.007-04:00

The view from our ICU room is awesome! The window is comforting, and the changing weather serves as a sort of metaphor for what we're going through inside. From bright sunny days, hazy fog, approaching storms, terrential downpours, and beautiful sunsets, there are extreme highs and lows. But no matter what the the weather is, once it clears, you still have that beautiful city outside of this window, and this beautiful little boy on its other side, in here fighting and doing so well.

Theory of Evolution

2008-08-15T00:43:00.006-04:00

When babies startle, they throw their arms up and make a "C" with their fingers. It's called the Moro Relfex or the startle reflex, and I got a kick out of seeing Jake do it.

Some evolutionists believe this is a behavior left over from when we were apes - when a monkey falls from a tree, they throw their arms up and try to catch a branch on the way down. At least that's what one of the nurses told us when we were in the hosptal in Boston.

Maybe Jake is dreaming of swinging from trees in the picture below.

Tummy Time

2008-08-15T00:20:00.004-04:00

Jake has been kicking ass developmentally. He's right on target with everything - head control, smiling, laughing, using his hands... We've been upset that he's going to suffer some set backs since he's been laid up in a hospital bed for the past ten days. Likely he'll have to play some catch up to get back to where he was. Greg and I are ready to work with him as much as he needs, and knowing our amazing son, he'll be right back to where he was in no time.

Here's some pictures of Jake's first tummy time when he was a month old.

We're looking forward to hours and hours of tummy time with him again soon.

Keeping a Sense of Humor

2008-08-14T22:21:00.009-04:00

Everyone's favorite party hat...

...now available for your littlest drinker!

Extubated!

2008-08-13T18:31:00.005-04:00

Jake has traded in his breathing tube for a funky new hat!

After a rocky start, Jake is handling extubation well. He was very agitated and upset after they took the tube out. They stopped his morphine and versed at 9am and didn't give him adivant and methdone until 3pm. I had warned them all day not to let him go into withdrawal but no one listened. I think sometimes doctors think too clinically. "Take him off his meds to see what he can do. If he goes into withdrawal we can give him meds then." They don't take into consideration the pain the patient goes through and the anguish thier parents feel helplessly watching. You constantly need to advocate for your child in here! He's on a BiPAP machine now which provides his lungs pressure support while he breathes on his own. It's quite a ridiculous contraption but does the trick to help get Jake back to breathing on his own.

BEFORE

AFTER

Jake failed his first extubation in Boston. We were devestaed at the time, but it turned out to be one of the best things for him. A developing infection kept him from succeeding the first time. That infection gave us precious time for his ventricle to begin functioning better and allowed everyone to hold off on decision making for a week.

Here is the before and after from Boston when he was just 2 weeks old.

BEFORE

AFTER

The Many Moods of Jake Maxwell Casden Part 2.

2008-08-11T15:39:00.005-04:00

Despite such a traumatic event, our little bug is still himself. Here he is on day 3 of his hospital stay, awake, alert, and as expressive as ever.

Hell

2008-08-11T11:29:00.006-04:00

It would be an understatement to say the last week has been the absolute worst of our entire lives. Our little bug is in the hospital with some serious issues with his heart.

Last Sunday evening, Jake woke up from a nap crying very intensely. This is a very specific cry, almost like a scream. After he stopped crying, he was perfectly still for a brief moment then finally settled down. When I looked over at him, he was very pale and in a sleep-like state. I went over to grab him and he was also cold and clammy. He came around within a couple of minutes. His temp was normal. We put him the oximeter and his pulse and O2 levels were fine and he even sucked down four ounces of milk. He seemed fine, but Greg and I were still rattled. We called our pediatrician, but their automated phone system wasn't working. We called the page number for our cardiologist and spoke to Dr. Berman who asked us to come into the emergency room for observation.

Jake had his vitals checked and then went for various tests in the ER - an EKG, X-ray, and Echo. Everything seemed to check out. They repeatedly tried to stick him for an IV line. After 8 attempts we finally said no more. It was four in the morning and he hadn't slept for more than 30 minutes at a time and we were all exhausted. They were ready to send us home, but one cardiologist said to admit him for 24 hour observation. This turned out to be a decision that saved his life.

Once we got to our room and got settled we were woken up again by another IV line attempt. Again it failed. Then our doctor came in and she was very concerned with Jake's episode. They set up another echo for later that morning. The echo showed signs of increased pressures in the right side as well as pulmonary hypertension. The poor function of the left ventricle had been causing a back up of pressure through the left atrium, pulmonary artery and the lungs. We had hoped to avoid it, but it was finally time for Jake to go into the Cath lab to get more accurate measurements and perhaps re-balloon the valve.

We finished up at echo and were being transported back to our room, Jake started gagging and then threw up all over me - he had just had a bottle of formula so I didn't think anything of it. He throws up all the time. He settled down and we got back to the room and started cleaning him up. He was his usual happy self - smiling and kicking. The nurse brought in his meds and I gave him a half dose of his digoxin. He immediately starting that scream/cry he did the day before. After a couple cries he stopped, almost as if frozen, and turned pale then blue. I started screaming for the nurse who had just left the room and Greg ran to get help.

What happened next is a blur. About 50 people rushed into the room. Greg grabbed me and we huddled in the corner while the team worked on Jake. Greg somehow had the clarity to yell, "he needs oxygen" and they got the mask on him right away. He held me while I was in hysterics. We never clutched anything or anyone as hard as we clutched each other.

It's too painful to rehash the next thirty minutes. Jake received compressions and shocks from the defibrillator. They tried to get meds in by poking them into his shin bones since he didn't have the IV line in. Our cardiologist came and dragged us out of the room. She came back and told us they were trying but she didn't think Jake was going to pull through. It was chaos and hell. I felt as if I was outside of my body. Finally after 30 minutes, she came and told us that his heart was finally shocked back into a normal rhythm. We were ecstatic.

Jake is in the ICU now. He has been stable all week. He had a cateterization to create a hole in his Atrial Septum to act as a "pop off" should the pressures in his heart get too high or should he go into arrest again. He's being treated for pulmonary hypertension. They've told us he'll need a transplant.

There is still another step we can take, though it comes with a lot of questions. The doctors in Boston might be able to do an endomyocardium scraping surgery to relieve some of the restrictive scar tissue from the left ventricle. Our doctor in Boston seems to think this is the way to go, but the doctors here do not have any experience with it so can't offer us any advice. We're waiting to hear from Boston on our next steps. From there we'll form a new plan.

I'm going to keep this blog to the lighter stuff - stories about us and Jake from life at home and in the hospital. The hard medical stuff will be updated on Jake's Care Page.

We love Jake more than anything and await the day we bring him home. We know we'll have many adventures to add to the One Bad Bug blog. Until then, please call on whatever you believe in to help him through and send positive energy his way. He has an army full of love out there pulling for him.

Here he is recovering the morning after his cardiac arrest.

The Games We Play

2008-08-03T17:30:00.005-04:00

There ain't nothing sweeter than seeing your boy smile, except maybe hearing him laugh when he smiles. We've discovered two new games that makes Jake do both.

It's a bird. It's a plane. It's SUPER JAKE!

(We did not dress Jake in some crazy yellow super hero getup. It looks like a cape, but it's actually his bib turned around backwards).

The Lone Ranger is Rides Again

(Greg bounces Jake on his knee while singing the Lone Ranger theme song)

Jake loves both games, especially because he plays them with his daddy!

Uncle Silver

2008-08-03T17:14:00.003-04:00

One of our saving graces during the two months we spent in Boston was our friend Michael Silver. We spent a couple weekend nights eating chicken wings and drinking beer and watching college hoops while we anxiously awaited my induction date. (Disclaimer: I was not drinking the beer). It was a nice distraction from the stress we were going through, to say the least.

We met up with Silver in the park today and he couldn't get over Jake's size or his newly acquired head control. I have to admit, Jake has come quite a way since Silver first saw him in the hospital. Silver, on the other hand, has thankfully remained very much the same. We really appreciated hanging out with you Boston, man!

Silver visiting Jake in the hospital in April.

Silver and Jake in Prospect Park in August.

To learn more about our friend Silver, check him out on Who Wants to Be a Millionaire.

March to the Barch

2008-08-03T16:54:00.003-04:00

I have this great memory from when I was like five years old. I was playing in the backyard at my Aunt Jo's house with my sister Dana and cousins Carrie and Carla. For some reason, one of us had the idea to get underneath a sleeping bag and to march around the yard chanting, "March. March. March to the Barch." What is the "Barch"? No idea, but it sure was fun when I was five.

Jake loves to flail and kick his legs whenever he's happy or excited. I told Greg the "March to the Barch" story and now we sing the chant to Jake when ever his legs get moving. It's even expanded into calling him our little "Barch Marcher". So it goes when you become a parent and you find yourself not only making up pointless songs, but also using pointless words.

Here's our little "Barch Marcher" in action. Oh and stay tuned to the end of the video for a special treat as Jake's excitement gets the best of him.

The Many Moods of Jake Maxwell Casden

2008-08-03T16:47:00.002-04:00

Whenever someone meets Jake, they always comment on how alert and expressive he is. He has an expression for every mood and the moods change often as evidenced in the rapid succession photo shoot below.

Play Date with Dash

2008-08-03T16:04:00.002-04:00

My friend Angie and her husband Alex treated Greg and I to an awesome Mexican brunch this weekend and Jake finally had the chance to meet their adorable son Dash. Dash is 9 1/2 months and is extremely mobile, crawling around and pulling himself up. It made me excited for when Jake can do those things, but Angie says enjoy the sedentary times now. Once they get going, you're in for a chase. Dash proved her point as he darted underneath the couch to retrieve a stray Cherio. It will be fun to get them together once Jake is crawling around too.

Meet Dash.

Jake meets Dash. Dash drools on Jake.

Our bundles of joy.

Adventures in Gastronomy

2008-08-01T21:26:00.008-04:00

Jake expanded his palate this week, adding rice cereal to his staple of formula fortified breast milk. Mealtimes have always been a struggle for us. Jake has never been a big fan of the bottle. Blame it on several weeks of tube feedings in the hospital. He seems, however, to have taken to the spoon quite well. Feeding is still a challenge. Jake gets pretty excited and kicks and flails about and pulls his bib up over his face. I'll take that over the screaming, back arching and puking any day!

Here he is eating like a champ!

Tune in next week for adventures with applesauce.

So, what's up with the name?

2008-07-28T21:30:00.006-04:00

"Bug" is Jake. We started calling him Bug in the hospital. We came into the CICU (Cardiac Intensive Care Unit) one morning and Jake was bundled up in a green blanket wearing this ridiculously cute green hat. He looked just like a little bug snug in his cocoon.

Well isn't that sweet? What about the "One Bad" part?

Anyone reading this blog probably knows of my husband's love of hot rods, specifically Mopars. Between 1968 and 1971, Dodge called their B-body cars the Scat Pack - the Coronet, the Dart, and the Charger - all the muscle cars. The Coronet was called the Super Bee and "One Bad Bee" was an advertising slogan Dodge used for it. Greg went to the drag races recently and came back with this for Jake.

Greg was gone all day at the drags, but everywhere he went there was something to remind him of Jake.

Put it all together and you get "One Bad Bug". Or, more simply, my son is a badass. His nickname is Bug. He is "One Bad Bug".

There you have it.

Welcome!

2008-07-27T22:19:00.006-04:00

Welcome. I'm Amy, aka "Bug's Mom" on this blog. Bug is my son, Jake Maxwell Casden. He was born on March 26, 2008 at 8:12 AM. He weighed in at 7 lbs, 13 oz and was 20 inches long. He came out screaming and playing air guitar (see Fig.1).

Fig. 1: Jake playing air guitar

Jake's a special boy. He was diagnosed with a congenital heart defect when I was 20 weeks pregnant. A big one. Aortic stenosis evolving into hypoplastic left heart syndrome. I had an innovative (innovative = experimental) procedure done in utero to open up his heart valve. The procedure worked in preventing HLHS from fully developing and Jake from needing multiple open heart surgeries. But that's not what I'm writing about here.

Jake is now four months old. Despite the rough start, he's doing quite well. You can read all about those first three months here. This blog is all about the growing, discovering, struggling, learning and loving we're doing now. (See what Fig. 2 for what Jake looks like now).

Fig. 2: Jake Now

I hope you enjoy the many adventures of One Bad Bug and check back often to see what he's up to.